So what is the general idea here? Need to make doubly, triply sure that I limit the number of infections I get for the remainder of my life? I can do that. Washing my hands. Never, ever touching my face. Staying out of harms way as much as possible ...

Of course this doesn't eliminate all im reading about CMV causing low grade arterial inflammation that eventually causes plaques to form and arteries to harden earlier than the rest of the population...

My thoughts are that any herpes virus including cmv etc contributes alot to symptoms of cfs/me in those who have these infections but i think these infections only occur to this extent because of our underlying immune defiency(or autoimmunity). So i think we need antivirals to reduce this viral load but then need to do something to improve our immune function/nk function to maintain these improvements when one comes off antivirals. Also might need periodical treatments with antivirals when these buggers reactivate to a degree that our immune system cant handle. Its well known that these viruses cant be irradicated from the body, in healthy people these infections are controlled by the immune system, which we dont have . At this stage i think we will need to be on antivirals all the time or atleast until a good treatment for our immune system is invented, maybe this is where ampligen could come in or immunovir may help?? As for controlling inflammation etc i think this is where antioxidants are important and optimising our hormones also plays a big part.

heapsreal - thank you. Unfortunately the medication indicated for CMV has a black box warning as a known Carcinogen. The Ganciclovir or ... something like that. Valacyclovir? ... so I can't take it. Won't take it. Someone recommended another injectable antiviral to me last night (@Sushi ) so I am trying to get some through a pharmacist friend. Maybe. Not sure how dangerous it is. I dont like that this virus is infecting all the tissues in my body and making my cells its home for the remainder of my life. I would ike to limit how much of my body it infects if possible. But at this stage I am at least 6 months into this, so im pretty sure I am toast. I would hypothesize that those who stop CMV from getting into to many body tissues may have no problem with it long term, whereas others who it gets into every part of the body, end up with many problems long term ... So stopping it from progressing is important. Probably too late for me. Thanks to my idiot doctors who sent me home after seeing the positive CMV IGM (acute) test result.

[ Unfortunately the medication indicated for CMV has a black box warning as a known Carcinogen. The Ganciclovir or ... something like that. Valacyclovir? ... so I can't take it. Won't take it.

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That would be Valcyte (valganciclovir). Yes, it's a med with known potentially serious side effects. OTOH, would you rather your body was ravaged by active herpesviruses for the next 30-50 years? As with all serious illnesses, treatments have a risk/benefit trade-off. We all need to make the best decision we can given our individual circumstances.

SOC if there was some way for me to be 100% certain what is happening in my body, it would be a no brainer. The problem is weighing those risk/benefit issues against an extremely uncertain diagnosis. That ends up doubling the risk, and cutting the possibility of benefit in half. Taking a risk on Cancer based on nothing more than a hunch or a theory, which most traditional doctors seem clueless about or outright reject - makes the decision very difficult.

SOC if there was some way for me to be 100% certain what is happening in my body, it would be a no brainer. The problem is weighing those risk/benefit issues against an extremely uncertain diagnosis. That ends up doubling the risk, and cutting the possibility of benefit in half. Taking a risk on Cancer based on nothing more than a hunch or a theory, which most traditional doctors seem clueless about or outright reject - makes the decision very difficult.

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I agree, it's a very individual decision. I chose to go with Valcyte for my daughter and myself and am extremely happy I did. That doesn't mean it would be the right (or wrong) decision for anyone else. There are a lot of other issues at play for all of us -- other cancer risk factors, quality of life, immune status, just to name a few.

i chose the antiviral route because these types of infections increase the risk of cancers etc, i think we are dammed if we do or dammed if we dont but i think the risk is less with treatment then no treatment but thats just my view and decision. Some of the immune mods like immunovir maybe something of interest to you.

heapsrealSOC
Any opinions on what you'd choose in my boat? Im about 5 months into this. I am for the most part completely normal, but I struggle with major exercise fatigue, muscle twitching all over body, sensory issues, cramping, aches pains and sometimes just generally feeling crappy. Doctors tell me its not the CMV because CMV wouldn't last this long. Obviously the IGM being positive 4 months later proves CMV lasts this long. But I am unsure what is causing my problems. For all I know my Cat Scratch Fever reactivated and that's whats hitting me right now. I don't know how to proceed. I feel like I am in preliminary stages and could be a "success story" if I take the right approach right now. But many have told me to give the CMV time to resolve first ... watch the IGM numbers as they continue to drop ... then decide what to do. Part of me feels like thats akin to saying "Let the CMV continue to proliferate through the cells in your body". Part of me thinks "Hey maybe if i let it finish, ill be done from here on out like 90% of the human population and this miserable 6 months will be over". I just don't know what to do today. Right this minute. Right now.

You make it sound as if you have a quite unique affliction, PhoenixBurger, but in fact chronic viral infections are very common in people:

Epstein Barr virus is found in around 95% of adults, HHV-6 virus in over 90%, Coxsackie B virus in 55% of adults, cytomegalovirus in 50% to 80% of adults, and parvovirus B19 in 50% of adults.

Not to mention: echovirus, varicella zoster virus, HHV-7, HHV-8, adenovirus, influenza, norovirus, coronavirus, parainfluenza, metapneumovirus, papillomavirus, bornavirus, which are all commonly found in the general population.

What Heaps said. Treating the opportunistic infections give many of us relief, but it's not the core problem with me/cfs. I tested very high viral load of cmv and treated for a year on cidofavir. Knocked it down to being undetectable. It allowed me tremendous improvements. Brought me back from the abyss. Cidofavir is a dangerous drug, especially being on it for a year like that, and I guess one just have to weight the odds with a good doc. Do the potential benefits outweight the potential hazards.

True cmv and other herpes viruses are pretty much ubiquitous in the population and makes very few of us sick (as far as we know). It certainly is not the cause of me/cfs. But for whatever reason, I got lots better after knocking it down.

Tristen maybe i've been fortunate then. I have reason to believe this is a primary infection. I had an exposure of sorts that would very clearly match CMV exposure. Even the timing. And over the last 4 months I have watched my IGM slowly drop as my IGG slowly rises. I am hoping this means my body is handling the infection on its own. I am taking Lysine in some random hope that it will help. I have valtrex here but when I take 500mg I get viciously depressed for about 6 hours. Grown man and I cried twice when I took it. So im not sure about Valtrex. Maybe in another month or so, the IGM will dip into negative range and ill be done with this. Only God knows.

PhoenixBurger, what I would do today is based on my family's history with Valcyte and is probably biased because of that. It may not be what is right for you, of course.

Three people in my family have taken Valcyte. The one whose symptoms were relatively mild (like yours) and the one who wasn't ill for many years are both in remission. I was sick longer than both and was much sicker than both when I started Valcyte. I had a big improvement (bedbound to largely housebound) and I feel a lot better, but I'm far from fully well. While we don't know whether it's absolutely true, we suspect that the intervention before the virus did a lot of damage is the reason those treated early and aggressively are in remission and I'm not. If you were my family member, I'd advise you to jump on the Valcyte. But that's because of my family's experience and might not be right for you.

My best advice is to get the right immune testing first if you can manage it. That will take a couple of months, which will give you the chance to see if the infection will clear on it's own. If your immune testing shows immune abnormalities (which is likely if you have ME/CFS) then you have a strong reason to take Valcyte -- your infection is still active and your immune system is impaired so it's going to have trouble clearing the infection.

I don't know where you are, so I can't suggest where you might go for the right testing. I think the tests you need are not common, so you'll likely need to connect with an ME/CFS specialist who can test for NK cell function and CD-8 cell numbers at least. There might be other tests other people can suggest.

Tristen maybe i've been fortunate then. I have reason to believe this is a primary infection. I had an exposure of sorts that would very clearly match CMV exposure. Even the timing. And over the last 4 months I have watched my IGM slowly drop as my IGG slowly rises. I am hoping this means my body is handling the infection on its own. I am taking Lysine in some random hope that it will help. I have valtrex here but when I take 500mg I get viciously depressed for about 6 hours. Grown man and I cried twice when I took it. So im not sure about Valtrex. Maybe in another month or so, the IGM will dip into negative range and ill be done with this. Only God knows.

I got so much better treating the CMV, I would almost agree with you about it being primary infection. Maybe it is for some of us, but not for me. I am about 75% better. Was 90% bedbound with severe OI. I was brutally sick. Now I have zero OI, not bed at all. Maybe just 50% homebound and have to be very careful with the stressors. The PEM is my remaining symptom, but it's not nearly as bad. I now recover in a few hours or a day as opposed to weeks before. If I didn't have the PEM, I would be damn near well. My doc said it's the last of all symptoms to resolve. I did that Tx in 2009 and have not relapsed. But I can tell relapse is but one stressor too many.....like I used to do thinking I was invincible.

I've had me/cfs for 19 years now. Maybe had I treated cmv 18.5 years ago, I would be well today.....who knows. Unless we get a breakthru, I will likely have this disease for the rest of my life.....but there are obviously things I can do to improve, to manage the disease, and to greatly decrease the symptoms.

Good advice to use good docs and labs for this testing. Mine was done with Wisconsin Viral Research Group. They found high CMV viral titer, and this was after I had already tested negative for it with several other labs. .

i think if u have a low nk function test which is common in cfs/me, then u could have problems with your immune system trying to control cmv. 5 months is a long time to be still sick from it, generally being post viral with malaise etc will only last a few months in a 'normal' person. also worth getting tested for other immune defiencies like immunoglobulin sub classes etc. IGM titres going down i dont think is a good sign that the viruse is going down, it may do though but also could mean its just going more chronic especially if igg titres climb very high. Its a tough call but with 5 months of illness(active infection) i would be tempted to try an antiviral, if not keen on valcyte then maybe consider famvir as its cheaper and a better side effect profile then valcyte and has helped others with cmv and hhv6.

My illness started with cmv mono and while in this post viral state was when i came down with chickenpox for the second time in my life and shortly after ebv mono. I think being in this post viral state is a state of low immunity which can leave u open to other infections too.

@Tristian, did you work directly with Wisconsin Viral Research Group or did you go through a physician?

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Those labs require a physicians order and were done thru my me/cfs doc (Peterson). They are not covered on most insurances either. I'm still paying for those labs.......about $400 each time and I've done 6-7 of them. It's one of the few things I've had to pay for out of pocket working with him. Did the HHV6&7 several times with them as well....always negative.

You make it sound as if you have a quite unique affliction, PhoenixBurger, but in fact chronic viral infections are very common in people:

Epstein Barr virus is found in around 95% of adults, HHV-6 virus in over 90%, Coxsackie B virus in 55% of adults, cytomegalovirus in 50% to 80% of adults, and parvovirus B19 in 50% of adults.

Not to mention: echovirus, varicella zoster virus, HHV-7, HHV-8, adenovirus, influenza, norovirus, coronavirus, parainfluenza, metapneumovirus, papillomavirus, bornavirus, which are all commonly found in the general population.

Of the people with HHV-6, has there been any determination as to which of these will have the HHV-6A or the HHV-6B? I would imagine that that will be something on going or if one is determined to be much more dangerous than the othe

Of the people with HHV-6, has there been any determination as to which of these will have the HHV-6A or the HHV-6B? I would imagine that that will be something on going or if one is determined to be much more dangerous than the othe

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The figure I remember reading is 3% of those with HHV-6 will have the nastier A variant, and 97% will have the more benign B variant.

Robert Gallo, the co-discoverer of the HIV virus, thinks that HHV-6A should be considered as a separate virus.

HHV-6A is known to dramatically accelerate the progression of AIDS in macaques,1 and is thought to do so in humans too.1

I have always wondered whether the rarer HHV-6A might specifically play a role in ME/CFS, though this study found no major prevalence of one variant over the other ME/CFS patients.